What is health literacy?

Health literacy refers to an individual’s ability to understand and interpret information about their health status or their interactions with healthcare services.

Focus on improving health literacy involves supporting people to understand health information, by providing clear and accessible information at every opportunity. This includes all forms of communication (both written, verbal and digital), in healthcare environments (signage, posters and physical access points), and through enhancing online and digital accessibility.

Some definitions go further, in outlining an individual’s ability to independently find health information from external sources, or refer to someone’s ability to analyse and appraise health information (NHS England (NHSE), 2023a). Health literacy is considered a ‘systems issue’, due to the complex nature of information within healthcare systems (NHSE, 2025a).

If a person has high levels of health literacy, they can easily read and understand health information, are well-informed on how to act on the information provided, know their responsibility in acting on the information, and are aware of relevant health services and how to access them. These skills support individuals to effectively self manage their health and any health conditions they may have and support timely access to healthcare services – individuals are empowered to take active decisions about their health. On the contrary, those with low levels of health literacy can struggle to understand information, encounter problems navigating healthcare services, and have an increased vulnerability to misinformation or disinformation – all of which can lead to poorer experience and outcomes.

Scale of the challenge

The National Institute for Health and Care Research (NIHR) estimates that 7.1 million adults in the UK have a reading age of nine years (NIHR, 2022). This translates to 1 in 6 adults with a literacy level of 9-11 years of age or below (NHSE, 2023a). Typically, medical and healthcare communications are not always appropriately targeted at the reading and comprehension levels of the patients and communities they are for. Some have referred to the gap between health literacy rates and healthcare information as an ‘inverse information law’ (Rowlands, 2013). Research has found that 40% of adults report that they struggle to understand health content, rising to 60% when the health content contains numbers and statistics (NHSE, 2022a). A recent audit of communications with one trust found that the average reading age of their leaflets and letters was 16 years old, higher than the national average literacy rates (NHSE and Health Literacy Matters, 2024).

Results of a 2022 survey of charities, NHS trusts and private organisations providing health information, found that 33% of organisations responding to the survey had a health literacy strategy (an increase from 13% of organisations responding to a similar survey in 2019) (Patient Information Forum, 2023b). This result demonstrates that most organisations are not actively considering health literacy and prioritising health literacy at an organisational level. The same survey found lack of resources was a particular barrier to producing health literacy friendly information for 72% of participants (Patient Information Forum, 2023b).

In addition, health information and resources are increasingly provided in online formats. Some individuals face specific barriers in relation to digital health literacy, where they lack both digital skills and the ability to interpret health information (NHSE, 2023a). It is estimated that 10 million adults do not have foundation-level digital skills and 30% of all the people who are offline find the NHS one of the most difficult organisations to interact with (NHSE, 2023b). Research has shown that the readability of online health information can be complex, suggesting the need for high quality, plain language, online information sources (McInnes and Haglund, 2011).

Relevant policies

The NHS Constitution outlines the rights of patients to be ‘involved in planning and making decisions about your health and care’ (Department of Health and Social Care, 2023) and the National Institute for Health and Care Excellence (NICE) has provided a guideline for shared decision-making (NICE, 2021). Shared decision-making relies on adequate levels of health literacy in order to be effective.

All NHS organisations are legally required to follow the Accessible Information Standard (AIS) (NHSE, 2016). The standard aims to provide consistency in meeting the information and communication needs of patients, specifically those with a disability, impairment or sensory loss. It sets out steps trusts should take to identify and record patient communication needs and respond to these in accessible and understandable formats. This could include large print, Braille, or audio / visual versions.

NHSE has also developed a content guide, which provides a standard for the development of health content within the NHS (NHSE, 2022a). It includes guidance on the process to be followed and examples of best practice.

Given the correlation between health literacy and inequalities, efforts to improve health literacy and service accessibility will contribute to trusts’ statutory duty to consider how to reduce health inequalities in access to and outcomes from health services as set out in The Health and Care Act 2022 (clause 13G) (NHS Providers, 2022) and obligations to protect individuals with protected characteristics under the Equality Act (UK Government, 2010). The Health and Care Act 2022 also sets a ‘triple aim’ duty on NHSE, trusts and ICBs to have regard to the wider effect of decisions on health and wellbeing (NHS Providers, 2022).

NHSE’s National Healthcare Inequalities Improvement Programme has identified five strategic priorities for addressing health inequalities, which are all relevant to a focus on health literacy (NHSE, 2021a). The NHSE Core20PLUS5 framework outlines the approach trusts are recommended to take to reduce inequalities, by prioritising focus on the 20% most deprived populations, alongside locally determined ‘plus’ groups – with five key clinical areas for adults and children (NHSE, 2021b, NHSE 2022b). Trusts working in the most deprived areas should develop a greater focus on the health literacy levels of its population. NHSE have also developed a framework for inclusive digital healthcare which sets out the steps trusts and ICBs should take to address digital barriers to health that some groups may face (NHSE, 2023b).

In our NHS Providers health inequalities guide for NHS trust board members, we outlined an objective for trusts to review and update communications in response to the varying health and digital literacy levels of the patient population (NHS Providers, 2024a).

Additional resources and guidance are available at the end of this document.

Patient perspectives

Public satisfaction with the NHS is at an all-time low, owing to frustrations with waiting times and accessing care (The King’s Fund, 2025). Yet, data and information from national public attitudes surveys don’t provide us with much detail on public perceptions of communication and literacy levels, particularly in secondary care settings. Information from the cancer patient experience survey highlighted that in 2022 only 58% of patients felt that they were ‘given all the information they needed’ during their care (Office for National Statistics, 2024) – but this does not provide us with the full picture.

A recent public poll found that 25% of the public said that communication from the NHS is poor – citing issues related to patients having to chase test results, being unclear on how long their expected wait will be and not knowing who or how to make contact while waiting (The King’s Fund, Healthwatch England and National Voices, 2025). The survey looked specifically at NHS administration functions, highlighting the broader need to improve health literacy to improve patients’ ability to engage as active participants in their care. Taking a deep dive into the results has found that individuals experiencing health inequalities are more likely to need good admin support and communication, but are more likely to face issues (Lant, 2025).

Looking at the Accessible Information Standard (AIS) specifically, compliance has been found to be low within trusts and patients have shared that support to access healthcare services is not routinely in place or is inconsistent (Healthwatch England, 2023).

Negative experiences following poor health communication can also impact on the level of trust between patients and healthcare services, contributing to general negative feelings towards health and healthcare (Patient Information Forum, 2023a). National Voices has called on the NHS to improve how it communicates with people and communities in relation to access options, treatment and ongoing care (National Voices, 2023). Their research with communities has found that people often do not feel listened to or understood in their care. Research has found that good communication with patients involves using multiple methods, rather than one over the other. For example, patients do not want written information as a substitute for spoken information (Raynor et al, 2007).

There are also specific implications on patient involvement in clinical trials, with research identifying English literacy skills and broader communication skills as key barriers to participation (National Voices, 2024). Without addressing health literacy, inequalities in clinical trials will persist.